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Congenital Nasal Bones Agenesis: Report of a Rare Malformation.
Case Rep Med
December 2024
Operative Unit of Neonatology, IRCCS Ospedale Policlinico San Martino, Genoa, Italy.
Congenital arhinia and hyporhinia are rare facial anomalies whose knowledge usually comes from case reports. The severity of each case described in literature is variable; it also depends on associated malformations too. Since the newborns are obligate nasal breathers, babies with arhinia or hyporhinia usually have respiratory distress and need airway stabilization.
View Article and Find Full Text PDFAdvocacy for Children: A Pediatrician's Core Professionalism Responsibility.
Pediatr Ann
December 2024
Pediatric advocacy is an effort to champion the well-being of children and adolescents, ensuring access to quality health care and addressing socioeconomic issues linked to adverse health. This article explores pediatricians' responsibilities in advocating for their patients within the health care system and in broader societal contexts. Models of physician advocacy and the concept of advocacy as a fundamental professionalism responsibility, grounded in ethical principles and societal obligations, are introduced.
View Article and Find Full Text PDFHow to "Do Ethics" in Pediatrics Practice: A Framework for Addressing Everyday Ethics Issues.
Pediatr Clin North Am
February 2024
Department of Medicine, Johns Hopkins University School of Medicine; Berman Institute of Bioethics. Electronic address:
Pediatricians have a fiduciary responsibility to advocate for the best interests of their patients. They accomplish this through the therapeutic alliance with the patient and their parent. In everyday clinical medicine, the pediatrician may be faced with challenging situations.
View Article and Find Full Text PDFCare Issues in Patients with Rett Syndrome: A Parental Perspective.
Children (Basel)
October 2023
Pediatric Pulmonology and Cystic Fibrosis Unit, Bambino Gesù Children's Hospital, IRCCS, 00165 Rome, Italy.
Background: The purpose of this study is to better understand the way caregivers of patients with Rett syndrome perceive the quality of the health care services they receive and identify its main shortcomings.
Methods: A survey was distributed to all caregivers who are part of AIRETT (the Italian Association of Relatives of Patients with RS). The survey gathered information on the management of relatives of patients with Rett syndrome.
Responding to Parental Requests for Nondisclosure to Patients of Diagnostic and Prognostic Information in the Setting of Serious Disease.
Pediatrics
October 2023
Division of Palliative Care, Department of Pediatrics, Oregon Health & Science University, Portland, Oregon.
Learning that one's child is seriously ill can be devastating, requiring families to decide when and how to share information about diagnosis and prognosis with their child. In most cases, this disclosure is made thoughtfully and collaboratively with the medical team. Some parents, however, may be concerned that disclosure will take away their child's hope, cause emotional pain, or exceed the child's capacity for understanding.
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